A journey through the world of OI

Dueling Banjos

After a blog hiatus of a few weeks without a new post I’m once again ready to play catch up to let all of our friends and family know what’s been happening. If you asked me briefly what we’d been up to I’d say something like, “Well, I’ve been working and sleeping some. Les has been caring for Megan and sleeping less. Pete has been going to preschool and sleeping quite a bit. Megan has been drinking milk and sleeping a lot.” That about sums it up, right? I guess at this point I could post some pictures and call it a night, but I’ll try to expound a little for the sake of those who’d like to know a little more about how we’re really doing.

While it feels as if it’s been a mundane couple of weeks there have still been plenty of things happening. We had a couple of nice visits from family with Les’s cousin Jessica and Aunt Carolyn (Terry’s, though she came bearing oatmeal cookies from Paul Jr’s) staying with us for a weekend and my Dad spending a few days with us in between a mission trip in Mexico and a conference in Chicago. Both were really enjoyable visits that served as great help and very welcome distractions. We also have had continued visits from friends and acquaintances all over the Denver area who bring meals and stop by to let us know that they’re still thinking about us. The outpouring of support has been absolutely staggering and life changing. It’s hard to be the recipient of so much love and heartfelt generosity and stay the same as you were before (thank goodness). It’s truly remarkable to see how much one very little girl can open the flood gates of kindness in our lives. My words cannot possibly express how deeply grateful we are for each and every person who has expressed love and a willingness to jump in and help or sent wonderfully thoughtful gifts.

While all of that warm fuzzy stuff might make you want to sit back and reflect on happiness or bask in the bright light of generosity, life has tried to catch back up with us and keep us too busy to relax. The handle broke off of our kitchen sink so I spent a night with my head in that base cabinet replacing it and working on our 50-year-old plumbing (scary, right). Then that very night I noticed that the bathroom faucet had a drip. Within about a week’s time the drip had turned into almost a steady stream, which turned into another plumbing adventure. While the faucet replacement itself went pretty well it has left me with a flexible waterline that’s now leaking in a spot that I never touched it. I guess that just being manipulated was enough to do in that piece of piping. I need to fix that soon, but here it is Sunday night and I didn’t make it to the hardware store for the necessary replacement parts this weekend. Hey… there’s always the Thanksgiving Holiday! We’ve also started a furniture refinishing campaign in our house. Switching to one income definitely rearranged our plans of replacing all of our hand-me-down furniture in the not too distant future. Once the older antique pieces became more permanent, we decided a face lift made a lot of sense. The furniture has been moved back and forth from houses and apartments all over the place multiple times and the dry Colorado climate hasn’t been particularly kind to it. I know that at the very least they’ve spent time in Florida, Alabama, Indiana, Kentucky and now Colorado with multiple stops in a couple of those states. The truth is that I know that Great-Grandmother Garrett would be proud that her furniture has been such a useful bunch of stuff and quite honestly I’m more thankful for it all now than I’ve ever been! I have to say that the dining table in particular is especially impressive. We don’t have a dining room and our kitchen doesn’t have a lot of real estate for a table. That little old table is cozy for 2 people and with 2 drop leaves and a couple of insert leaves it can comfortably sit 12 people when we push our living room furniture aside and have a BYOC gathering (bring your own chair). Anyway, that’s a lot of information about antique furniture for a blog titled Miss Megan Clara and I sense some of you losing patience so I’ll move it along.

Megan has really been doing pretty well. I cannot stress what a great baby she is often enough. She sleeps through the night fairly regularly though you have to stay up a little late to pack her full of milk and get up early to get her filled back up in the morning. She’s incredibly easy-going and she’ll sit around with you for hours and be wide awake and not make a peep. She just enjoys taking in all her surroundings. She’s very alert and pays attention to whoever is talking or singing or whatever they may be doing. I’ll go ahead and give some inane doting parent babble about how awesome I think my kid is because she can now bring her hand to her mouth and lick her finger. That may sound strange, but we really are pretty excited about it. While there have been a couple of days that we were concerned about how she was feeling we’re thinking that she might not have had a new break in several weeks which makes it seem that the Pamidronate is doing its job. After I adjusted her head on her pillow she cried about her neck positioning for a few days and she also cried for a few days after getting an RSV vaccine shot (her doctor thinks it stuck in her bone). Past that it’s been an uneventful few weeks for her bones which is great news! She had a doctor’s appointment on Friday this week just for a quick check-in which wasn’t all great news, but nothing to get too worked up about either. When asked how long Megan might be on oxygen her doctor ventured a guess of years. She also said that some of her past patients with severe cases of OI have been on oxygen for life. While that isn’t what you’d like to hear it’s not really earth shattering either as we’re currently dealing with that and it’s somewhat inconvenient, but manageable. The most unfortunate piece of news was that Megan has lost a little weight. She’s only 9 lbs 4 oz now. It only took those couple of rough days of being uncomfortable and crying to fall behind on her feedings enough to lose some of the ground that we’d gained. Based on that information her doctor told us that she won’t be ready for the medi-port and will have to get another PICC line. Again, not great news but we’ve done it before so it’s manageable. Finally, her doctor gave us very stern warnings about getting sick, especially with the flu as a tough illness for a little girl with a compromised respiratory system might quickly be fatal. Duly noted… I’ll try not to get the flu. We’re currently in the process of scheduling her next surgery and treatment which looks like it will fall sometime the week before Christmas. We’ll keep everyone posted.

It may be that the biggest piece of medical news coming up might not involve Megan at all. Remember all of the furniture I was talking about? Well, Les decided to not wait on me and to carry an end table up the stairs from the basement by herself and now has what we fear may be a hernia at the top of her c-section incision just on the North side of her belly button. We’ve described what’s going on to her doctor via email and she suspects that it’s a hernia, but we haven’t been able to go in and see her yet. Hopefully we just won’t end up with dueling surgery schedules which isn’t nearly as entertaining as dueling banjos (although it does include some of the same slack-jawed stares). On that note, I’ll wrap this up. I’ve included a random assortment of photos from the last few weeks including our scavenger hunt, some fall foliage at our house, the sunset the night Megan was released from the hospital and some cute baby Megan smiles. Enjoy!

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Thank you so much for the updates. I read your blog very regularly to look for new updates and of course pictures of the cutest babies on the planet!!! I miss you all so much. Also, has anyone ever told you that you should write a book????!!! Your stories are so entertaining!! You are a fabulous writer and photographer!! Is there anything you CANT do??? lol. Tell Les to stay strong and I love her!